I know I said we didn’t remember a lot about urgent care or the emergency room – I lied.
Because compared to what we remember (next to nothing) about the ten days between our discharge from the emergency room and our eventual (inevitable?) hospital admittance, our accounts of urgent care and the emergency room were practically eidetic.
We kept Love Bug home from school the first week. We both stayed home with her Monday and Tuesday, and I had to return to work on Wednesday. I think I sobbed a lot throughout the day, but that may have come later. Maybe we were hopeful for our appointment Thursday. Maybe we were defeated. We genuinely don’t remember anything more leading up to it.
Thursday morning we met with the first of two orthopedic surgeons (we’ll call him Dr. L). He listened to our story, which we repeated for the umpteenth time, and within five minutes of observing Love Bug, he diagnosed her with brachial plexus. He recommended that we meet with his partner, an international leader in brachial plexus injuries, insisting that we would be better served by his partner’s expertise. We very much appreciated the lack of ego, but almost lost our minds when we were told this expert was only in residence on Wednesdays. I’ll remind you this was all happening on a Thursday, which meant we’d have to wait another week for any kind of action. I’m pretty sure I shut down completely at this point. So much hope had hinged on this appointment, and here we were being shunted off to another doctor. Urgent care sent us to the emergency room; the emergency room sent us to Dr. L. Dr. L gave us a preliminary diagnosis, but was still sending us to someone else.
There was so much anger, so, so much, and utter helplessness. And with each hand-off, I think we lost a little more faith in the system.
But what other choice did we have? We wanted the best care possible, and if we had to wait until Wednesday to meet with the best care provider, we would make it through.
We’d started referring to Love Bug’s paralyzed arm as her “sleepy” arm, by this point. I also want to reiterate that she wasn’t moving anything from her right shoulder, down. Her entire limb was dead weight at her side, so Dr. L gave us a mesh sling to help contain and protect it.
I was physically at work that Friday; mentally, I’m not sure where I was. We visited my parents in Maryland that weekend, to celebrate Love Bug’s second birthday. I don’t remember anything about the visit. I’d question whether or not we even went, except we have pictures of the occasion.
Dr. L had cleared Love Bug to return to school, but we were so scared she’d hurt herself, as unbalanced as she was, so Chris – the most supportive husband and father on the planet – accompanied her Monday and Tuesday mornings, so that she could have a bit of normalcy and socialization during an otherwise frightening time.
Love Bug continued to deteriorate. She grew increasingly despondent, becoming lethargic and cranky. She refused to walk by herself, instead insisting on being carried everywhere. She became uncharacteristically clingy, slept for hours throughout the day, and acted boneless – just, totally limp. She was able to move around, but just lacked the energy to do anything. She also lost her appetite.
I remember Whitney coming home one day, and being in shock at how listless Love Bug was. A friend was visiting us, having brought Love Bug a birthday card from school, and Love Bug was not interested in interacting with her (Love Bug’s favorite teacher!) or any of us. I’d say she was unresponsive, but she did tell us “no” to anything we suggested doing. All she wanted to do was sit, boneless, in her swing as we pushed her gently. That might have been Whitney’s breaking point, but she’ll talk more about her perspective another time.
Whitney says Chris and I went out one night, to a movie, to regain some normalcy for ourselves, which I had completely forgotten about. I sort of remember it happening, but the memory is like it happened to someone else, not us. It was self-preservation, in the end. We’d been holding our breath for a week and a half and I guess…we needed a moment to release it.
We made it to the following Wednesday, August 31, ten days after onset.
And I think Chris would agree when I say, in hindsight, it was totally worth the agonizing wait.